Diabetes in the long run. My personal experience of what it's like to be a type 1 diabetic runner and triathlete.

Thought for the Day

Tuesday, April 8, 2008

correcting ignorant prejudice against diabetics

An open letter to the Medical Director of the Twin Cities Marathon.

Hello Doctors,This letter is intended for the Medical Director of the Twin Cities Marathon. I have seen several sources state that this is Dr. Bill Roberts, but an Associated Press Wire Service story in October of 2007 reported that it was Dr. Steven Sterner. My apologies for to any recipients not interested in this topic.This is an open letter, and will be available to the public at:

http://t1d-runner.blogspot.com/

I'm writing to you in an attempt to correct a severe error which I feel must have been made without careful consideration.In 2006, David Thoen and I, both type 1 diabetics over 40 years old, ran as Global Heroes in the Medtronic Twin Cities Marathon. David was in the top third of his age group, and I was in the top fifth of mine.In the next two years, 2007 and 2008, rules have been in place to prevent nearly all 40 year old or older type 1 diabetics from applying for participation in the Global Heroes program.

This is so wrong.

The current rule discriminating against older diabetics is:

"Runners 40 years and older, who have had diabetes for more than 15 years, are ineligible."

I will refer to this as "the rule."When this rule was first suggested, everyone who heard it should have laughed. Then they should have dismissed it as absurd and moved on.

The explanation for the rule is:

"As cardiovascular risks associated with diabetes mellitus increase with longevity of the disease, with a rise in risk of sudden death from atherosclerotic causes for people over 40, it was determined to limit the age of diabetic runners."

Note that there are no questions or rules concerning atherosclerosis or cardiovascular disease in diabetics. It is simply assumed that diabetics in this group must have atherosclerosis, in spite of the fact that all applicants must certify that their doctors approve of their participation in events like this.

Note that the rule applies to the 10 mile race as well as the marathon.

Note that in this explanation there is no reference to types of diabetes.There are two main types of diabetes, type 1 and type 2. Type 1 diabetics comprise only about 10 percent of all diabetics. Both types of diabetes are related to genetic causes or predispositions, but type 2 is frequently related to diet and obesity, while type 1 diabetes is not.I will leave it to those with more medical background than I have to determine whether throwing the small number of type 1 diabetics in with the much larger number of type 2 diabetics gives an accurate picture of the likelihood of cardiovascular disease in type 1 diabetics.

I am not advocating rules discriminating arbitrarily against type 2 diabetics. I don't think blanket generalities should be used to make specific decisions on individuals.

I don't see the need to assume anything about the health of applicants. Specific concerns can be addressed with specific questions in the application process.

The rule does not affect most type 2 diabetics. Very few type 2 diabetics use insulin pumps. Of those type 2 diabetics using insulin pumps, very few will be long distance runners who have had diabetes for over 15 years.There may be a small number of type 2 diabetics, diagnosed over 15 years ago, using insulin pumps, over 40 years old, and running long distance races with the approval of their doctors. These are the type 2 diabetics arbitrarily forbidden from applying to be Global Heroes.

It's wrong, but that's the way it is.

The rule applies to nearly all type 1 diabetics over 40. Type 1 diabetes used to be referred to as "juvenile onset diabetes" or simply "juvenile diabetes" because for most type 1 diabetics, the disease first appears during childhood. Even if it does not appear in childhood, it is likely to have appeared prior to the age of 25.

The rule does not affect type 1 diabetics unfit to run either of the events.Those people are ruled out by the other requirements.

Anyone applying to the Global Heroes program must:

"Have previously run similar distances to the race to which he/she is applying (i.e. a 10 mile race or marathon). No first-time or beginning runners."

"Certify they have consulted with a physician who deems the runner medically fit to participate in the race."

The rule does ban people like David Thoen and me.I was first diagnosed as a type 1 diabetic at the age of 15. I have run 43 marathon length or longer races since turning 40, and 3 marathons before turning 40.Considering the training and racing I have done since turning 40, I can estimate that I've run over 10 miles at a time at least 500 times. But under the current rules of the Global Heroes program, it is unthinkable, beyond the pale, that the Twin Cities Marathon and the Medtronic Foundation could sponsor someone like me to attempt to run 10 miles. The risk of me falling down dead is just too great.

This is not just a little bit wrong.

The rule affects people like Bob Pearson, who was 46 years old in 2002 when he ran the Western States 100 mile race in 20:36. He ran 100 miles at a pace faster than most people our age can run one mile, but it is inconceivable, out of the question, that he could attempt to run those 10 miles from downtown Minneapolis to the capitol in St. Paul as a Global Hero.

This is very wrong.

Those are the kind of people to whom this rule applies, people that everyone knows can do the race. All others are eliminated by the other requirements and the Medtronic Foundation's selection process.

This letter is not about letting out of shape couch-potatoes suffering from the results of bad lifestyle choices run marathons. Those people are eliminated by other things, including never applying to the program.Yet it is those people upon whom the justification of this rule rests.

This letter is about letting people who have worked hard to remain fit enough to run one of these races, in spite of chronic illness, to apply for participation in the Global Heroes program.This letter is about removing an ignorant, incorrect statement about the health of diabetics, that as they get older it is dangerous for them to run, removed from the Medtronic web site.

In discussions about this rule, a couple of things have come up.

Some people have said that it has something to do with liability, as if there might be increased concerns and insurance requirements if this rule were not in place.This seems unlikely.Everyone in either race signs a waiver.More than anyone but the elite runners, applicants for the Global Heroes program must have proven their ability to participate in one of the events.From the Global Heroes applicants only a small number representing about 0.2 % of total participants in the races will be selected by the Medtronic Foundation. Only a few of these would be diabetics over 40.

The Global Heroes eligibility requirements do not apply to the thousands of others registering for the two races. The Global Heroes represent no added risk to the Twin Cities Marathon. Instead, they are some of the safest runners particpating. If a few of them were diabetics over 40 that would not make a difference.

The winning 8 person relay team in the RAAM, the Race Across America bicycle race, for 2007 was Team Type 1, a team consisting of all type 1 diabetic riders. One of them, Bob Heyer, was 42 years old and had diabetes for 27 years.Obviously he was ineligible for the Global Heroes program. That is how wrong this is.The organizers of Team Type 1 are apparently unaware of any high likelihood that such riders might just die on the road. In 2006, in addition to Bob Heyer, Pratt Rather rode on the team in spite of the fact that he was 40 years old and had diabetes for 25 years.The Team Type 1 development team for 2008 includes Bob Schrank, 40 years old, Mark Suprenant, 44 years old, and Tim Powell, 41 years old.This team is sponsored by Sanofi-Aventis, makers of Apidra, and Abbott Diabetes Care, makers of Freestyle blood glucose meters.

Every year, programs like the ADA's Team Diabetes, the Joslin Diabetes Center's Team Joslin, JDRF, Diabetes Action, and Run for Diabetes train diabetic runners to run marathons, half marathons, and other races. They don't have age limits. They don't require prior running experience. Most of them simply ask that particpants consult with their own physicians and sign a waiver.Most of these programs have corporate sponsors who are unafraid of the risks.

The American Diabetes Association has an annual bicycle riding national fund-raiser, the Tour de Cure. They train and have fund-raisers, many of them diabetics, ride up to 100 kilometers for donations.The Tour de Cure is sponsored by AT&T, Gold's Gym, Johnson & Johnson, Valero, Discovery Health, and Performance Bicycle, apparently with no overwhelming concerns about liability in spite of the fact that there is no age limit.

The JDRF Ride to Cure Diabetes annually trains riders, many of them diabetics, to ride bicycles on long courses at several locations around the country. The longest of these rides is 105 miles across Death Valley.This program is sponsored by RoadID and USA Cycling.To be fair, however, I must admit that they do have an age requirement. Participants must be over 18 years old.

I was told that there wasn't more resistance to the idea of this rule because it was thought that it would not affect very many people.This hardly seems fair since the purpose of the Global Heroes program was to honor exceptional people. By definition, there should be few of them.Yet choosing the age of 40 should not be expected to eliminate a small percentage of diabetic runners. Almost half of all marathon finishers are over 40. The age of 40 is not old at all for a marathoner.In 2007, 11 of the Global Heroes chosen, nearly half, were over 40. One was over 70.

I was told that this rule was never intended to imply that it is unsafe for diabetics to run.I simply can't understand how anyone would think that. The explanation states:

"These guidelines are designed to help manage the overall risk of participants."

To the extent that anyone thinks that the Twin Cities Marathon and the Medtronic Foundation know anything about distance running and diabetes, one has to they believe it is unsafe for diabetics over 40 to run.People at both the Medtronic Foundation and the Twin Cities Marathon are aware of people who have read this rule and been shocked and convinced that they were being told that running was dangerous.Of course experienced diabetic athletes know how absurd that is. The fact that the rule is too absurd to be believed hardly seems like a reason not to remove the rule.

As Ryan Shay's tragic death illustrates. it is not absolutely safe for anyone to run a marathon.

However, it is not fair to single out a whole class of people who have shown that they are as qualified as anyone else to run the races, based on misguided mis-interpretation of statistics.

I used only a few examples of specific people in this letter even though I could have listed pages of the athletic accomplishments of diabetics over 40. It shouldn't take more than one example, though.If there is just one diabetic over 40 years old who has had diabetes for more than 15 years and is qualified to run the 10 mile race at the Twin Cities Marathon, then this rule is wrong.Of course it is wrong. It shouldn't have been considered. It should have been laughed at and dismissed when it was brought up.Yet it has been in place for two years now.I used the word "ignorant" in the subject line of this letter. That is the nicest word I could use.That's how wrong this is.

6 comments:

Anonymous
said...

Go get 'em. "the rule" is a complete sham!! I was stoked to hear about medtronic's contest but can't believe they don't want anyone over 40 to run it. i thought medtronic wanted to show how people with diabetes aren't limited by their diesase. guess not.

About results...I haven't gotten a reply and I don't expect one, at least not one that indicates that anyone read my email. They can't change it for this year, applications are already closed, so it does not behoove them to say anything about it until next year.I've gotten some assurances that they will review their guidelines next year. Of course, that's what they said last year, and all that happened was that it went from "all diabetics over 40" to "all diabetics over 40 who have had diabetes for more than 15 years." They added another arbitrary and unfair number to an arbitrary and unfair rule.Last year, one of the emails I sent specifically pointed out how silly it was that someone who was 39 and had diabetes all his life was unaffected, but someone over 40 who might have only had diabetes for a month was ineligible.It's like they were halfway listening.I'm really afraid that next year there will be a silly rule about type 2 diabetics, because I mentioned the difference between type 2 and type 1. Or because I mentioned that they treat the ten mile the same as the marathon, maybe they will say that older diabetics can only apply to run the ten mile race as Global Heroes.

Great letter Jerry!I just followed a link here today and am still enraged. What is the matter with those people? I am 47, have been using Minimed pumps for 17 years, had type 1 for 35 years and am training for an Ironman this fall. You'd think they would want to take some credit, instead of pushing us so rudely and ignorantly out of the contest.